Monday, 22 January 2018

The NICE Guidelines – Starting Again? and Neuroinflammation in the Brain of Patients with ME / CFS



N.B. Please sign the NICE Guidelines Committee petition – see below.

There was some encouraging feedback from the recent NICE ME/CFS Guidelines Stakeholder meeting, an early milestone in the long process of revising the guidelines. But was such encouragement justified? I wasn’t there myself, so I am grateful to those who attended on our behalf. Blogger and patient advocate Sally Burch reported that Guidelines Director Prof Mark Baker declared: “We’re going to tear it up and start again. We won’t allow it to look the same” while Prof Jonathan Edwards reported as follows (writing in the Science for ME forum):

“What intrigued me most was the elephant in the room – the reason why we were there at all, which was not mentioned once by the speakers from the floor and I suspect hardly at all even in the groups – the need to remove recommendations for CBT and GET. It nevertheless became clear that the NICE staff were absolutely clear that this was why we were there and that they had taken on board that this was not an issue for a few minority activists but essentially for all patients. At our table the facilitator said ‘I presume everyone here is agreed on that’ – despite the fact that a paediatrician and an occupational therapist were present who I suspect may not have realised this was why we were there and for whom these remained standard practice”.

All this talk of ‘tearing it up’ and scrapping CBT and GET was less in evidence however, in the letters which Prof Baker exchanged with Kathleen MCCall (who was representing the Trustees of Invest in ME). Writing in advance of the Stakeholder meeting, Prof Baker wrote: “I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline”.

This does not exactly sound like ‘tearing up and starting again’ so when the feedback from the meeting emerged, Invest in ME wrote again to question the discrepancies. This time, Prof Baker’s response was of particular interest. He wrote:

“I did indeed say that we will fully replace the guideline and start again…. However, it does not mean that we reject everything that is in the current guideline.”

So this sounds like parts of the guidelines are to be torn up then reinstated, which is easy enough with a roll of sticky tape but a bit confusing for those trying to gauge the mood music at NICE. Prof Baker goes on to explain:

“The problem is, I believe, in the unthinking and ill-informed manner in which the recommendations are imposed on people for whom they are not intended and/or not suitable… I was struck by some of the stories at the workshop about the misuse of the current recommendations and the disturbing extent to which they are imposed on people who are unlikely to benefit from them and for whom alternative approaches would be sensible… The current wording makes clear that patient agreement is required but I imagine that consent is not usually sought and that patients are not considered to have rights to refuse (which they invariably do have in fact).”

So it seems that Prof Baker is at least convinced of the need to safeguard severely ill patients, who do indeed all too often have GET imposed upon them – in clear violation of the existing guidelines. This crucial change is to be encouraged, of course, as is the need for all patients to be informed they have the right to refuse treatment. How exactly this is to be achieved is another matter however. As “the current wording makes clear that patient agreement is required”, what do you do to ensure such agreement is sought? Perhaps the addition of the words “we really mean it this time” in bold print would do the trick. The wholesale removal of GET from the guidelines would be more effective, I suspect, but to judge by Prof Baker’s letter to Invest in ME, that doesn’t appear to be on offer.

He says: “scrapping the entire guideline now would be massively counter-productive as it would almost certainly result in the withdrawal of the already dwindling number of services available to people with ME. Therefore, a rather more limited approach would be required to protect what is good whilst modifying what may be harmful”.

So in spite of saying he wants to tear the whole thing up and start again, Prof Baker clearly believes that bits of it are good and need to be protected. I can’t avoid the growing suspicion that these bits might include CBT and GET. Indeed, if not CBT and GET then what? A large part of our problem is that when it comes down to what purports to be ‘evidence-based’, there isn’t anything else. Of course the ‘evidence’ for CBT and GET is extremely unconvincing, as David Tuller and others have illustrated time and again, and the reason there isn’t the evidence for anything else is that CBT and GET – and the misapprehension about the condition which their adoption has brought into being – have effectively put paid to biophysical research for many decades. This sad circumstance may give us the moral high ground – from the perspective of those who understand – but it doesn’t actually help.

As Jonathan Edwards puts it: “All in all it seems to me that something important has been achieved but there is still more work to do. NICE are very clear that the great majority of patients believe that CBT and GET are worse than useless. They realise that a committee must not be made up entirely of psychiatrists. However, when the committee comes to look at the evidence the only evidence for treatments working they will find will be on CBT and GET. It is going to be hard for them to not at least mention that there is supposed to be some evidence. Hopefully that will not be followed by a recommendation. However, I sense an attitude even amongst physicians and paediatricians that if CBT and GET are not available they will have nothing to offer. A lot of doctors find that uncomfortable. They should not but they do. So there will be a tendency for CBT and GET to remain in the guidelines even if watered down. That will depend to a degree on who is on the committee. That needs some thought. Applications are being taken in June and July.”

So yes indeed, the personnel on the committee will be of vital importance. Graham McPhee, John Peters, Sally Burch and numerous other patient advocates have written a letter to NICE requesting that the committee members are chosen with openness and integrity. They have also produced a petition which anyone can sign. Over 2,700 have done so already. If you haven’t signed yet, please consider joining them.

This is important. As Jonathan Edwards says, doctors feel uncomfortable if they have nothing to offer. This unfortunate fact is the reason why so many patients with physical illnesses over the years have been treated as though they have a mental health issue. It probably won’t help the patient but it’s better for the doctor than feeling powerless.

Sad to say, CBT and GET may remain in the guidelines for this reason, if for no other. They haven’t been torn up yet. We can’t even be sure that Prof Baker’s proposed amendments to avoid the inappropriate imposition of these ‘treatments’ will be acted upon, as he is due to retire before the new guidelines are finalised.

It is good that many patient advocates attending the meeting left with a good feeling about it but, as I am sure they realise, the battle is far from over yet. As a starter, we need the right people on the guidelines committee. Don’t forget to sign that petition

Update: Apologies for my previous PS about the Royal College of Physicians (which I’ve now removed). It turns out I was quoting the wrong Royal College from the table. I hate to spread misinformation so many thanks to Annie who left a comment to set me straight. Nevertheless, as she points out, there is no reason for undue confidence in the RCP who are to take a leading role in the guidelines revision. Annie writes as follows:

“Excellent summary of where things stand so far with the review of the NICE guidelines.

“One point though the worrying comment you cite from the stakeholders comments during last summer’s consultation exercise was made by the Royal College of GP’s, not the Royal College of Physicians if I am reading the table correctly on page 89? Nonetheless, the Royal College of Physicians said they endorsed the comments of the Royal College of Psychiatrists and the neurologists whose submissions were poor and inaccurate and did not want the guidelines updated, so I am still not filled with confidence having the Royal College of Physicians so heavily involved.”


See also –

Neuroinflammation in the Brain of Patients with ME / CFS

https://www.ncbi.nlm.nih.gov/pubmed/?term=29348371

Brain Nerve. 2018 Jan;70(1):19-25. doi: 10.11477/mf.1416200945.

Abstract

Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is characterized by chronic, profound, disabling, and unexplained fatigue; cognitive impairment; and chronic widespread pain. By using positron emission tomography, our study demonstrated neuroinflammation in the brain of patients with ME/CFS. Neuroinflammation was found to be widespread in the brain areas of the patients with ME/CFS and was associated with the severity of their neuropsychological symptoms. The ongoing research would lead to the establishment of objective diagnostic criteria and development of an appropriate therapy.


Saturday, 20 January 2018

Restricted Spatial Windows of Visibility in Myalgic Encephalomyelitis (ME)


Nadia S. Ahmed, Irene Gottlob, Frank A. Proudlock and Claire V. Hutchinson *

Department of Neuroscience, Psychology and Behaviour, College of Life Sciences, University of Leicester, Leicester LE1 7RH, UK

*Author to whom correspondence should be addressed.

Received: 22 November 2017 / Revised: 2 January 2018 / Accepted: 11 January 2018 / Published: 17 January 2018

Abstract

Myalgic encephalomyelitis (ME) is a devastating disorder marked by debilitating fatigue. It not well understood and its diagnosis is controversial. It is very important therefore that significant clinical features are investigated. Visual symptoms in ME represent a group of distinct, quantifiable, clinical features that could significantly improve diagnosis and provide insights into underlying pathology. The purpose of the present study was therefore to explore the effect of ME on spatial windows of visibility using the spatial contrast sensitivity function. Contrast sensitivity was determined for stationary luminance-defined sinusoidal gratings spanning a five-octave range of spatial frequencies (0.5 to 16 c/deg) in a group of 19 individuals with ME and a group of 19 matched (age, gender) controls. Compared to controls, the ME group exhibited a restricted spatial window of visibility for encoding stimulus contrast. This was characterised principally by a contrast sensitivity deficit at lower spatial frequencies and a narrower bandwidth. Our findings suggest that contrast sensitivity deficits may represent a visual marker of ME, and be indicative of abnormal visual processing at the level of the retina and in the cortical and subcortical visual pathways. View Full-Text


Tuesday, 16 January 2018

I will help thee, saith the Lord


C H Spurgeon's Morning Devotional for 16th January

"I will help thee, saith the Lord."

Isaiah 41:14

This morning let us hear the Lord Jesus speak to each one of us: "I will help thee." "It is but a small thing for Me, thy God, to help thee. Consider what I have done already. What! not help thee? Why, I bought thee with My blood. What! not help thee? I have died for thee; and if I have done the greater, will I not do the less? Help thee! It is the least thing I will ever do for thee; I have done more, and will do more. Before the world began I chose thee. I made the covenant for thee. I laid aside My glory and became a man for thee; I gave up My life for thee; and if I did all this, I will surely help thee now. In helping thee, I am giving thee what I have bought for thee already. If thou hadst need of a thousand times as much help, I would give it thee; thou requirest little compared with what I am ready to give. 'Tis much for thee to need, but it is nothing for me to bestow. 'Help thee?' Fear not! If there were an ant at the door of thy granary asking for help, it would not ruin thee to give him a handful of thy wheat; and thou art nothing but a tiny insect at the door of My all-sufficiency. 'I will help thee.'"

O my soul, is not this enough? Dost thou need more strength than the omnipotence of the United Trinity? Dost thou want more wisdom than exists in the Father, more love than displays itself in the Son, or more power than is manifest in the influences of the Spirit? Bring hither thine empty pitcher! Surely this well will fill it. Haste, gather up thy wants, and bring them here-thine emptiness, thy woes, thy needs. Behold, this river of God is full for thy supply; what canst thou desire beside? Go forth, my soul, in this thy might. The Eternal God is thine helper!

"Fear not, I am with thee, oh, be not dismay'd!
I, I am thy God, and will still give thee aid."

Wednesday, 3 January 2018

Why study metabolomics in ME/CFS?


January 3, 2018


Happy new year, and happy #OMFScienceWednesday! As many of you out there are recovering from the holidays, today’s topic is metabolomics. Metabolomics simply describes a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.

Metabolomics has become a very hot topic in ME/CFS research, and one that we are involved in supporting, because Dr. Ron Davis and several independent teams have used it to show metabolic differences between patients and healthy controls. This certainly makes sense based on what we know about the disease and patients not having the energy to perform the functions they always could. Metabolism is incredibly complex and can vary a lot even in healthy individuals, so it’s important to collect as much data as possible from patients. More metabolomics data will help us to understand what exactly is going wrong in ME/CFS metabolism (or if different things are going wrong in different patients), help identify metabolic biomarkers, and hopefully point to treatments that can compensate for any defects in metabolism. That’s why we are funding studies like those of Ron Davis’ lab at Stanford and Bob Naviaux’s lab at UCSD.

To learn more about metabolomics and metabolism, check out this training link.

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Monday, 1 January 2018

They told me my illness was all in my head. Was it because I’m a woman?

Why doctors must stop disbelieving women’s symptoms and institutions must do more research on diseases that primarily affect women.


By Jennifer Brea
December 27, 2017

Five years ago, at a restaurant in Cambridge, my waitress brought me the check. I stared at the signature line, pen in hand, and froze. I was 28 years old, a Harvard PhD student studying political economy and statistics, and I had forgotten how to write my own name.

More than a year before, my temperature had spiked to 104.7. I thought I had a bad flu. After the fever subsided, I kept getting common ailments: sore throats, sinus infections, low-grade fevers. Except I would wind up in bed, inexplicably dizzy, for days on end. After the restaurant incident, I got to the point where I could leave my house only in a wheelchair. Some days, I did not have the strength to lift my head.

Seeking answers, and care, I would eventually see a dozen specialists at Massachusetts General Hospital and Brigham and Women’s. All of their tests came back normal. As my symptoms grew in complexity, my doctors started to use words like “anxiety” or “depression.” On instinct, I started taking my then fiance, now husband, Omar, to my appointments. (I thought I might be treated better if I had a male witness.) Then a neurologist gave me a diagnosis: Conversion disorder, which prior to 1980 was called “hysteria.”

In other words, it was all in my head.

So I tested the hypothesis, walking the mile from the clinic to home, ignoring the pain in my legs. Once home, I collapsed. My brain and my spinal cord felt like they were burning. I was bedridden for months, and have never been the same since.

It turned out I have myalgic encephalomyelitis, ME, more commonly called chronic fatigue syndrome. An estimated 1 million Americans have it. Twenty-five percent are homebound or bedridden and 75 percent can’t work. And yet every day I hear from patients with ME who struggled to receive a diagnosis. On average ME patients need five years to get diagnosed, and many sufferers report spending much of that time being told their symptoms are psychological. In general, women are 2 to 10 times more likely than men to receive a diagnosis of hysteria. And while globally, ME affects millions of men, 80 percent of people who have it are women.

The phenomenon of disbelieving women’s symptoms extends far beyond ME. Forty-five percent of patients with autoimmune disorders — the majority of whom are women — are initially told they are hypochondriacs before being accurately diagnosed.

We endure such waits, I believe, not because my disease is inherently inscrutable but because we have chosen not to invest in understanding it. For more than a decade, ME has received just $5 to $6 per patient annually in research funding from the National Institutes of Health, the second lowest of any disease for which NIH reports categorical funding. (The lowest, fibromyalgia, has a patient population that is 90 percent female.) Less than a third of medical schools even incorporate ME into their curricula. You cannot find answers to the questions you don’t ask — or don’t fund.

Here’s what we do know: The disease is frequently triggered by an infection, and many symptoms, including dizziness, appear or worsen when a person stands up (doctors call this orthostatic intolerance). ME patients have immune abnormalities, and some may have an autoimmune disease. We also have a defect that limits our metabolic ability to convert sugar into energy. ME’s hallmark feature is “post-exertional malaise” — after cognitive or physical exertion, every system of the body is affected so severely by symptoms that we call it a “crash.”

I’m lucky. I got diagnosed and have improved with treatment. I was able to give a TED Talk and, from bed, make a documentary, Unrest, about my experience. I can leave my house now, albeit in a wheelchair. But complete recovery from ME is rare.

When I first got sick, I thought maybe I had a rare disease — something doctors had simply never seen. Then I came to understand I was part of a community of millions living with ME who had been systematically disbelieved and marginalized. What I now know is that around the world, hundreds of millions live with autoimmune diseases. These are often complex, difficult-to-diagnose conditions that modern medicine is ill-equipped to treat. They disproportionately affect women and their incidence is rising. We need to band together across the borders of our diagnoses to build a movement for more investment in research and better care.

And in the meantime, it’s important that doctors tempted to offer a patient a psychological cause for their symptoms stop and ask themselves about the assumptions they might be making based on gender. Conversion disorder affects perhaps 14 to 22 people out of 100,000, so the chances a doctor will ever see a patient with it are not high. It would be far better, when confronted with a puzzle that defies diagnosis, to say, “I don’t know.” For patients like me, those words can be as lifesaving as medicine.

Jennifer Brea is a health activist and filmmaker whose 2017 documentary, “Unrest,” is on the short list for an Academy Award It premieres on PBS January 8.